'Determined' Weston women raise awareness of CF
PUBLISHED: 14:43 11 May 2011
AN ASPIRING politician and a graphic designer from Weston are aiming to raise awareness of the hereditary disease they live with which can shorten life and cause a considerable daily burden.
Hayley Dowdell and Amanda Wilkinson, both aged 27, have cystic fibrosis (CF), a debilitating condition which affects the lungs and digestive system – but the strong-minded women refuse to let this get in the way of their ambitions.
The pair are speaking out as part of Cystic Fibrosis Awareness Week, an initiative designed to increase the public’s understanding of the disease.
Amanda, who ran as a south ward Liberal Democrat candidate in last week’s local elections and has ambitions of becoming an MP, and Weston College graphics teacher Hayley, who has just launched her own website, say it is vital to take prescribed medicines to ensure the best quality of life.
Hayley, of West Wick, said: “I have lost a few people close to me, including people who had CF.
“The only advice I would give to anyone with this disease is to keep trying.
“I know how diligent you have to be with the treatment and people may not feel they get much out of it, as they will inevitably become unwell.
“But I am proof of someone who puts in a lot of time with my treatment and I still have a life.
“Some people may not realise how important the treatment is and may miss bits here or there and think it isn’t going to make a difference, but it does.
"It can be difficult at times but, if anything, it makes me more determined than ever"
“If I had given up then I wouldn’t be here now.”
CF is a hereditary disease but both parents have to carry the gene for their child to get it. One in 25 people who carry the gene may not even know it.
It is also common for CF sufferers to have diabetes too.
Symptoms include the production of an extra thick mucus which can be difficult to clear from the lungs.
"If I had given up then I wouldn’t be here now"
It is then hard to shift germs, which can develop into chest infections and cause lasting damage. The condition also affects the digestive system so medication is needed every time food is eaten.
Hayley, who spends more than an hour a day taking medicine, said: “If you have CF you will probably agree that the most problematic thing about it is the constant chest infections.
“This means time off work, or away from education, tiredness and not as much socialising - which is what I like doing a lot.
“Recent years have been my toughest as I have not been as well as I was earlier in my life.
“I only work part-time and I do take time off work - managing CF is a full-time job in itself. Although I do struggle and find my life frustrating and stressful, I do think I am lucky to have such supportive people around me. “I live with a wonderful boyfriend and have great family and friends and I have managed to get my dream job with very understanding colleagues.”
Amanda, whose tough treatment regime involves her taking more than 50 tablets a day, as well as inhaled and intravenous drugs and physiotherapy, says at times it can be a ‘struggle’ but she ‘just gets on with it’.
Amanda and Hayley have not met, as people with CF are not advised to be near each other as infections can so easily be transferred. They also require occasional hospital stays and courses of intravenous antibiotics.
Amanda, of Coleridge Road, said: “It can be difficult at times but, if anything, it makes me more determined than ever.
“I have been to university, travelled Germany on my own and am now pursuing a career in politics.
“As people with CF cannot meet up I plan on becoming an online mentor for sufferers, as I know how isolated you can feel at times.
“It doesn’t define who you are and I do as much as I can despite my illness.
“CF charities don’t have the same profile as lots of others, and this needs to change.”
There is no cure for CF, but the only national charity for the disease, the Cystic Fibrosis Trust, is dedicated to raising money for the vital research and gene therapy that is needed.
Trust spokeswoman Audrey Williams said: “Amanda and Hayley are an inspiration for a lot of us.
“The trust desperately needs funds to help in our fight to ensure a better life for the thousands of sufferers in the UK.”
A former Churchill Community School pupil, Amanda said the support of her friends has helped her a great deal and she is looking forward to achieving much more.
Hayley, who attended Worle Community School, added: “Life is becoming harder and my illness is deteriorating, but this has made me more determined.
“Travelling is definitely on the agenda in the future and a baby - if I can.
“I also love being creative, whether this is making things or doing graphic design and I have recently designed my own website; haycreate.com”
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